This Redhead's Baclofen Thread

[SlipperyPete]

This Redhead's Baclofen Thread

You seem like a very cool mom

redhead77;1176370 wrote:
I explained my concerns regarding this. The main one would be, what are the long term health implications? I'm not comfortable with the lack of data on this drug to want to stay on HDB for the rest of my life. I'd do it if it were the only way, but y'all know what I mean.
redhead77;1176370 wrote:
Someone posted some studies of people taking HDB. Those people who weren't taking it for alcoholism, but for MS, seemed to report less SEs than what we see here.

I've heard about people with MS taking 300 mg/day, but I'm sure there's some literature out there regarding it. Does anyone have anything on the topic?

[Bruunhilde]

This Redhead's Baclofen Thread

redhead77;1175699 wrote: My girlfriend had a Pure Romance party and I agreed to attend some time ago. I admit I had a great time. I even learned a couple of things. The right would be for sniffin and the left would be for lickin.

Wow, Red, I can't believe no one asked about this - please 'splain! Which right and left? Details details!

[Dr Olivier Ameisen]

This Redhead's Baclofen Thread

A FINAL PRECISION :

As mentioned in my book, my switch dose was 270mg/d. This was in February 2004. In a matter of weeks I went down to 120mg/d which I stayed on for a while. I since have used baclofen at ranges around half of that. But please realize that MY case is irrelevant and should not serve as a model. Each patient is different. A year ago, a british patient sought my help. He had been fired from a very important scientific job. His life was devastated. He was suffering injury after injury from falls. I progressively brought his dose up to 530mg/d. He had no side effect whatsoever and was biking with more energy than ever before. This dose fully suppressed his dependence. We since brought the dose down to 480mg/d and he now leads a normal life at 400mg/d. This is the highest dose I have ever prescribed.

The patient would long have been dead today. He is happier than ever and has a girlfriend, a dream he had long lost.

One has to balance the risks of baclofen not in a vacuum but in comparison with one of the most poisonous drugs : alcohol.

I invite physicians to search the medical literature and look for a single dangerous side effect of long term high-dose baclofen. It does not take a literature search of any sort to see that the drug alcohol kills every day. For this, one needs to open a newspaper or watch the evening news. Immediate and long term deadliness of alcohol is common knowledge.

The British Medical Journal published a paper a few years ago asserting that there is no evidence-based support that the use of the parachute prevents death and injuries since they could not find a study parachute use vs no-parachute use in a literature search. The authors conclude that in order to have evidence-based data, a trial parachute vs no parachute should be conducted. This article was of course humorous. The BMJ simply wanted to remind its readers that in medicine too, common sense should prevail!

Best wishes,
Dr. Ameisen

[Murphyx]

This Redhead's Baclofen Thread

redhead77;1176370 wrote: Regarding my visit with Dr L

Smaller, more frequent doses can help prevent SEs.
You need to stick around your switch dose.
Take your last dose several hours before you go to bed to prevent insomnia.

Hmmmm, sounds familiar :H. Smart bloke that Dr L.

[Murphyx]

This Redhead's Baclofen Thread

Dr A, have you considered writing a follow-up book, detailing what has happened in the years since, both to you and more generally in the world of baclofen and addiction?

Dr Olivier Ameisen;1177262 wrote: The authors conclude that in order to have evidence-based data, a trial parachute vs no parachute should be conducted.

More poor bloody rats getting squished in the name of science no doubt .:H

[redhead77]

This Redhead's Baclofen Thread

Dear Dr Ameisen,

It is difficult to express in words, the honor I feel that you have visited my thread. I also want to thank you for clarifying your personal dosing. I realize you stated we are all different, but this allows us to stop speculating. The story of the man you took to 530mg/d is poignant. Here is a man who would have died and now he has his life back. It is miraculous. What I do wonder, considering he had no side effects, is if we are all dosing this correctly? Maybe in this case, you would say “each patient is different”. I hope so, as I have had many side effects, and so many others here have too. People come and unfortunately go. If they do quit, it is almost always because of the side effects. It is always difficult for me to offer advice. Should they keep trying? Stay the course, knowing the side effects will resolve? I suppose it is a deeply personal decision for anyone. I can attest to a considerable lessening of side effects recently. I’m hoping the future will bring a complete cessation of them. It did take 7 months of difficulty. I think for some, overcoming the side effects may feel insurmountable. It seems you believe in them too. Here is an excerpt from The Guardian:


“Ameisen has not hidden the fact that baclofen can have side effects, particularly if not managed properly, including sleepiness (or somnolence), dizziness, nausea, violent dreams, headaches and bouts of depression, or that sudden withdrawal is unsafe. He has also stated that: "No medication works effectively for everyone, and baclofen is surely no exception." With no official figures and many taking it without medical supervision, it's impossible to assess baclofen's success rate accurately. There's also no definitive way to measure success: anecdotal evidence suggests that those who don't achieve abstinence stop taking the drug because they find the side effects off-putting, and who's to say they wouldn't eventually have been cured if they had continued? "So far it seems to work in all types except for one," says Ameisen, "and that's people who turn up once and don't come again. But it's not one size fits all; you have to refine it. Not to say that I'm a great doc, but every time I'm on the case I've yet to find a patient where it's not a success. I've been playing with this medication for 10 years."

The little pill that could cure alcoholism | Society | The Observer

Ahhh, when reading this excerpt again, maybe I’ve just answered some of my own questions. I don't believe I've answered the questions related to the side effects. It seems most people have them. This may prove an obstacle in the baclofen studies.

Once again, thank you for visiting MWO. We are always ecstatic to receive your information. I want to express a deep, heartfelt thank you for your discovery. I think you have probably saved my life. I believe in the future, your discovery will save many, many more.


Warmly,

Redhead


PS. I feel a little silly that your post came after Bruun’s, regarding an interesting party I attended. I’m sure you understand that life beckons after alcoholism and high-dose baclofen. I’ll bet you are even delighted that it does. I still think I'll wait to respond to her question. I don’t want it to come right after your post. There are plenty of other things I can write about in the meantime.

[terryk]

This Redhead's Baclofen Thread

redhead77;1176370 wrote:

I explained my concerns regarding this. The main one would be, what are the long term health implications? I'm not comfortable with the lack of data on this drug to want to stay on HDB for the rest of my life. I'd do it if it were the only way, but y'all know what I mean. His response was they believe it's safe. I asked him according to what? Who has been on it for a very long time? He said, Ameisen of course, has been on it the longest. He is in prime health. There are others too, who have been on it for a number of years. I informed him Dr A is one person. I can't base everything on one person. He understands, but tells me it seems people are most successful long term, on a dose closer to their switch.

SlipperyPete;1176515 wrote:
I've heard about people with MS taking 300 mg/day, but I'm sure there's some literature out there regarding it. Does anyone have anything on the topic?

This scanned journal article (in the) https://www.mywayout.org/community/f2...ml#post1112163, mentions the longterm safety and efficacy of baclofen, starting on the 2nd page, upper right with "There are several references to long-term, high-dose treatment for spasticity. Jones and Lance summarized their experience with 113 patients with spasticity treated with baclofen for up to 6 years. Baclofen dosage ranged from 30 to 200mg daily..."

-tk

[Bruunhilde]

This Redhead's Baclofen Thread

Hello Dr. A,

You have a large fan base here at MWO! Many people have been saved through applying your discovery of high dose baclofen. Congratulations on a lifetime achievement!

[curiousitydidwhat?]

This Redhead's Baclofen Thread

Did the article say anything about megalomania?

[redhead77]

This Redhead's Baclofen Thread

I've got to bite the bullet today peeps. I'm going to the doctor. Believe it or not, this is my least favorite thing to do...ever. But I'm sick as a dog. I started coming down with something on Friday. Sore throat, low grade temp, body aches. I now have a pretty bad cough. Wheezing, spewing, well, you get it. Sheer nastiness. I'm home from work, so as not to spew on the others (who are already sick). I'm feeling okay at the moment after popping numerous bronkaids and taking nebulizer treatments, but I can't do that long term, can I? I would if I could, because there's something very unappealing about getting naked under those bright flourescent lights. Doctors' offices don't have mood lighting, ya know? While I'm there, I'm going to have him look at this small, what I think might be... an umbilical hernia. I've been avoiding it and I might as well kill two birds with one stone. Yeah, I know. I'm falling apart. Welcome to middle age Redhead! I'll be back later to tell you the 'official diagnosis'.

[Murphyx]

This Redhead's Baclofen Thread

Awww Red, sorry to hear you're feeling poorly :l. But don't be such a wimp. Fancy not wanting to go see the doc.:H

Umbilical or paraumbilical hernias are nuttin', nuttin' at all. Fancy worrying about one so much you need to get it sorted. Pah, what wimp!

[RudyB]

This Redhead's Baclofen Thread

well our murph is a cheery support, ain't he?!

sorry you feel shitty red. do you really have to get NAKED? can't they listen to your lungs through your shirt? just lift it to check out the hernia. hope it's nothin. let us know.

xo ru

[redhead77]

This Redhead's Baclofen Thread

Thanks for the warm support Murph.

Nah, I don't have to get naked Ru. I was just being melodramatic! Go figure... I can wear a bra and panties under my gown. I need for him to look at my hernia. :H I also need him to look at the newly developed abdominal pulse I have. I was mentioning it at work and everyones like "oh, it's probably your anatomy, since you've lost weight", well, I haven't lost that much! An abdominal pulse can be a sign of a AAA (aortic abdominal aneurysm). It would be very unusual for a woman my age to have a AAA, unless I had some sort of a connective tissue disorder...can you see where this is going? Now I'm getting melodramatic and neurotic. If I find a great life coach, I might need to have the individual on speed dial. :H I'll see if the doc thinks it needs an ultrasound. I might as well get all my concerns out of the way.

Alright. I am going to take a nap now.

xxoo

[Murphyx]

This Redhead's Baclofen Thread

Whoa there Red, way too "melodramatic and neurotic". It's highly unlikely you'd have an aortic aneurysm, what with you being a young woman. Plus isn't the usual symptom like ... errrr ... kinda, death?:H They run in my family, cool huh? lol.

Is there another reason for an abdominal pulse? Loads I'm sure.

Enjoy your nap and don't go dying, OK? :l

[redhead77]

This Redhead's Baclofen Thread

Maybe the first symptom is death in your country Murphy.:H It certainly can be, a ruptured AAA has like a 60% mortality rate. If it's diagnosed and treated, it is a much better option (although the surgery is one of the worst I can think of). That's not to say I have one. I think statistically it would be like, I won't even guess, barely measurable. I'd have a better chance of being hit by lightening maybe. Don't know. That said, I developed this abdominal pulse. I noticed it last spring. It before I lost weight, I was in the height of weight gain from bac, actually. I wasn't too worried, it was just in the back of my mind. Thought I'd ask about it...eventually. Recently, I bounced it off my coworkers who said, it is likely my anatomy and then with my weight loss, it became more noticeable. It is said to be more noticeable in a very thin person (not that I'm very thin). I'm normal. When I told them how much I weighed when I noticed it, they said hmmm, that's curious. I then bounced it off a doc friend I have. He's a resident, finishing up his specialty. He said the same thing, at first...it's normal. Then when I told him the other stuff, he said. Hmmm. Maybe get it checked out. Here's where the neuroses come in. I started to read about females my age who had AAAs. It wouldn't be unheard of for me to have a AAA, but only if I had something else majorly wrong. Like Marfan's syndrome or Ehlers-Danlos syndrome, not that I have a Marfan habitus, but still...I was bothering myself. :H

Here's what's happening. I asked the doc about it and he could see it. He could also feel my pulse in my abdomen, but it wasn't bounding. He said he thinks it's likely normal. I went on to explain how and when I discovered it. He said, "do you want an ultrasound?" I said, "would it make me crazy...um neurotic, if I said yes?" With a slight smile, he said "No, I think it would be reasonable." "But, it is very unlikely you have a AAA."

There you have it. I have an order for an ultrasound of my aorta. Indication: Prominent abdominal pulse. :H I'm not rushing off to schedule it, but I'll get it done at my earliest convenience.

Other diagnoses: bronchitis, which is no surprise with my smoking and the fact that I'm working myself ragged. I think it's time to rethink both of these things. Maybe sooner, rather than later. I'm not smoking much now, because I can't. So maybe now is the time to think about it. And I have an umbilical hernia. It's small and doesn't require intervention, unless I would want to intervene. I'm not going to. Putting my body under an elective surgery right now, with everything else I'm doing, is just too much.

So, I'm home again today with a zpack and an inhaler. Well, I'm home until 4pm at which time I have to take a class from 4 till midnight. Stange hours, I know, but my work offers classes at strange times to accomodate all different schedules. This is the only time I could fit in my schedule. I then have to work in the morning...early. Not great considering I'm sick, but I have little choice. It's the last day of the class.

At least I slept last night. I have my inhaler and my nebs and I avoided the bronkaid. The other night I was so jacked up on bronkaid, I didn't sleep at all. I was speeding my brains out. Since I rarely take my Adderall anymore, I can really feel the stimulant effects of the bronkaid, and it's not good in the middle of the night. DUH!

Phew. I'm always happy when I get these things straightened out.